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Kidney failure

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User

Posted 16 Oct 2022 at 21:39

Hopefully, the paralysis is a temporary thing as the RT can cause some inflammation to the area. The urinary retention could be linked to the paralysis - if so, bowel problems are also likely. Hoping things look brighter tomorrow.

Have you told the oncologist or oncology nurse that the ward nurse and physio provided conflicting information? I would want some assurance that the physio had read the notes and knew what s/he was talking about :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Oct 2022 at 19:57

Gary seems much brighter today , pumped full of steroids . I hadn’t seen him since Friday . He can lift both legs up but has not tried to stand yet as they have told him to stay in bed .

unfortunately the head scan he had yesterday showed cancer in the lining of the brain . They are still awaiting the pelvis scan results but it’s not looking good . The ward doctor has asked if I can speak with gary’s oncologist to see if treatment can be changed .Urology nurse said she hopes something can be done but also be prefer for the worse .

Out of sheer dispair do you think it is worth asking about privately funding the luituim 177 , would he be considered .

im not giving up on him.

User

Posted 17 Oct 2022 at 21:03

Has he had a PSMA scan previously? He would need to be PSMA reactive for the luituim 177 to be viable. Your onco is best person to ask TBH..

User

Posted 17 Oct 2022 at 21:18

Like franci says, he needs to be tested to see if he is PSMA+ first and I am not sure you have time to arrange those scans as you would have to wait until he is stabilised and out of hospital before you could arrange for him to go to a centre which offers PSMA scanning (unless of course the hospital where he is an inpatient happens to have PSMA scanning capacity). Only once you know that he is PSMA+ is it worth exploring NHS availability and private options but in reality, as Lut 177 is often given once every 3 months, he would have to survive for a year to get the benefit and that, sadly, is looking less likely now. Also need to ask whether the brain cancer affects suitability - it may be that the potential side effects of delivering RT direct to the lining of the brain would just be too great.

More immediate change might be if you can persuade the onco to switch to apalutimide on the basis that the abiraterone failed within 3 months. If the onco says that isn't possible because you are now 14 weeks on, ask about stilboestrol, an old fashioned treatment but sometimes comes up trumps for men who are unsuccessful with abi / enza / apa.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Oct 2022 at 15:56

Today has been probably one of the worst days of this horrible cancer journey .

I went into see gary and the doctor on the ward came around , she said it was highly unlikely now gary would regain any walking abilities, or bladder or bowel control . And sending him home would provide a high level of care.
I just thought I would ask if they are still giving him the abiratarone and she said no . It’s failing and I ask if anything else they could do to be honest I was so shocked I sobbed and couldn’t even think what to say .
gary said “ is that it ?” and she said unfortunately yes , to put his affairs in order and spend what ever inheritance he was going give.then drawn the curtain back and on to the next patient .

I probably somewhere in me knew that gary was not on a good place but to hear it out loud and so matter of fact ,

they are still continuing radiotherapy to his spine and another doctor /radiologist came to talk to me . He is going to give fart radiotherapy to the skull base as he has numbness in his lip and chin and cancer growing behind his eye to relive pressure.5 sessions .he added they will add bicalutamide ( which I’m sure gary has had) to the mix .

after all the radiotherapy they discussed coming home I assume to die .

my beautiful husband , 55 years old will probably not see Christmas and a 4 year old who will be robbed off her dad . I feel so utterly destroyed

User

Posted 20 Oct 2022 at 16:23

That's terrible news to hear,I am 6 months into my journey and it makes my head drop when I hear stories like yours,I felt I needed to message and I'm thinking of you both.I know it's easy said but please try to be strong for your other half and child.

Regards Phil

User

Posted 20 Oct 2022 at 16:49

I am so sorry Leahy. The bicalutimide may give his HT a bit of a boost and slow down the progression.

I can't remember whether you said you were already receiving PIP but if not, ask the hospital team to fill in their bit of the application urgently as that money will help you to pay for whatever is needed to be able to care for Gary - home care assistance, a medical bed / air mattress to prevent pressure sores, etc. You may be eligible for carer's benefit which will also help. A difficult conversation to be had about where G would like to die, at home or in a hospice. The hospital will begin liaising with local authority social services to put together a care plan - don't agree to him coming home without a care plan in place.

Macmillan have some good resources for helping to explain to children and your local hospice may also have advice on this or even a children's support worker. Finally, Macmillan, Maggie's and/ or your local hospice should be able to offer support to you over the coming weeks and months.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Oct 2022 at 18:22

So sad to read this latest post, have been thinking of you both and had hoped we might hear some better news soon.

Can only imagine what you are going through. Hope you manage to get all the support you can to help care for Gary and your little girl. And hope Gary can remain comfortable and pain free.

Our thoughts, love and best wishes are with you x

User

Posted 20 Oct 2022 at 19:01

So sad to hear this news my thoughts are with you it is totally shocking news hopefully you will have the care needed at this time gaz

User

Posted 26 Oct 2022 at 05:59

Very sorry to read this. Thinking of you and hoping you are getting some support.

User

Posted 26 Oct 2022 at 10:56

Thank you everyone for your kind and helpful words.

Gary is still in hospital as he has his last radiotherapy to the spine today and he started the radiotherapy to his skull Monday so he will finish on Friday .

we had a meeting yesterday with physio , palliative care nurse and doctor , let’s just said the doctor was the least helpful , as didn’t read any notes and put his foot in it everytime he opened his mouth while sipping the biggest coffee I’ve ever seen . He eventually left saying his main consultant will be better at discussing stuff with gary and myself .

all equipment has been order ,air bed , chair, commode , some kind of stand to transfer from bed to chair , wheel chair to hire it nurse said I can ask palliative care if they would cover it . Carers to come 4 times a day .key safe so they can enter if I’m not there . Unfortunately no night carers available ,

he is able to open bowels independently which he couldn’t last week and catheter will stay in place . He is determined to walk , he has upper body strength and can move legs but physio said his awareness of placing his legs has gone and they are very reluction to try to get him up as if he fell he could fracture. after pressing about even transfer to a wheel chair two physios arrived , he has been in bed for over a week . God you have to been on them all the time !

today I will see gary’s consultant who has been there from the start , I will beg for any other treatment available but I’m now more excepting there probably isn’t going to be .but will never forgive myself for not asking .

I will ask about time frames just so I can make some sense of this as feeling very out of control .

User

Posted 05 Dec 2022 at 09:55

I thought I would give an update ,

gary returned home on Halloween and we set up the living room for him to have his bed so he can watch telly , thank god for the World Cup !

the first few weeks he was great , eating loads and generally alert , he has been reducing his steroids and the. We think he had a urine infection , the GP prescribed antibiotics but he had a fever. Urine that smelt of antiseptic and one day he slept for nearly 20 hours .he has recovers well .

the Pallative care nurse gave him a week s course of steroids 4mg a day to help with appetite , it did increase but didn’t do much for his energy levels . Apart from one morning he work up and wanted to go to the barbers to get his hair cut ! We did go and he looked a lot better afterwards .! The small things !

the last week he has had night delirium , it started with “where am I” and them got worse with “someone kept putting me back to bed and why have you got all these people coming to the house . “ It never last long and he almost laugh when he’s said it , but it’s creeping into the day now , I’m guessing as he is sleeping so much . We have had a lot of visits , friends cousins and other family to see him . I’ve put a single mattress in the living room with him and it helps as I’m a pretty light sleeper and even if I just answer him he’s ok with that .
the nurse said it could be progression of the disease or just an build up of all the day’s activities and trying to make sense of it all .

He remains pain free just on 10mg of slow release morphine tablets twice a day , he’s topped up on liquid morphine about 5 times in 5 weeks 1.5 mg

.
I know the end is fairly near now , and I pray it will be gentle for him . My heart breaks for my 4 year old daughter , she said to him yesterday , I wish you could come back and be normal but if you die and go to heaven that’s ok . I will still love you .

User

Posted 05 Dec 2022 at 17:33

So sorry Leahy to read that, your final paragraph was the saddest yet most inspirational thing I've ever seen on here.

Hope you and your little girl manage to stay strong for each other. X

User

Posted 05 Dec 2022 at 18:12

It's heartbreaking news we all fear wish you all the best at a sad time xx gaz

User

Posted 05 Dec 2022 at 20:12

It's hard to know what to say, but hope I speak for us all on here in sending you a huge virtual hug...

User

Posted 05 Dec 2022 at 22:34

I’m so so sorry to hear your sad news, such a difficult time for you, it highlights again how nasty and cruel this disease is.

You are in my thoughts xx

User

Posted 06 Dec 2022 at 00:08

Leahy, devastated for you. I hope that you have good support around you and are able to take some breaks, even if just short ones. You will be no good to anyone if you become exhausted. A common phrase but important - who cares for the carer?

> from me too xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Dec 2022 at 06:00

So sorry to read this, has put tears in my eyes.

My Dad passed very gently in the end after a similar traumatic time with paralysis etc.

He was squeezing my hand in the way we agreed would show he was comfortable. That was 20 years ago but it reassures me and my mum to this day.

User

Posted 06 Dec 2022 at 15:54

Dear Leahy, So sad, my heart goes out to you. This disease is so cruel. Try to keep your strength up, you’ll need every ounce.

Leila x

User

Posted 06 Dec 2022 at 16:01

So sorry to read this. It’s a cruel disease.

Ido4

User

Posted 06 Dec 2022 at 19:41

Leahy, so sorry for the difficult time you're all going through. I hope Gary can be as comfortable as possible.

You're daughters words say a lot about your family and bought tears to my eyes. I'm sure you will look after each other at this difficult time.

Cheers

Bill

User

Posted 06 Dec 2022 at 19:47

I posted yesterday but really can’t find it sorry.

Really heartbreaking to read your latest update. Have been thinking of you and wondering how Gary was getting on.

You obviously have a very brave courageous young lady on your hands. And what beautiful words she had for her daddy.

Glad to hear that Gary is relatively pain free. I also pray this time will be gentle for Gary and for you and your little girl. Our thoughts are with you and we send lots of love and best wishes xx

User

Posted 06 Dec 2022 at 21:37

So heartbreaking to hear this news. My thoughts are with you both.

User

Posted 12 Dec 2022 at 21:41

Thank you all for your kind messages ,

Last Tuesday the worst thing happened and what I had dreaded ,Gary fell out of bed or tried to get up out of bed and fell.

I have been sleeping on a mattress in the living room and my daughter had woken up at 2am so I was trying to settle her upstairs and I heard a shout … I came down to Gary wedged in between the wall and the bed on the floor .my first thought was “are you in pain “ he replied no . I quickly gathered he hadn’t broken anything .he didn’t have the strength to get up on his knees but I managed to pull the mattress over and he rolled onto it . 3 hour wait for an ambulance and they managed to get him back into bed at around 5.30 am check him over ,he did have a temp of 39.6 so they asked the rapid response to call the next day .I was up by 7 am daughter to school and waited for a lovely man who took Gary’s blood and found out he had a dangerously low red blood count … nurses said if it comes back under 70 you will need a transfusion , Gary’s was 53 ! Within 3 hours he was in an ambulance to the hospice ( nurse tried hospital or hospice which ever quicker ) I don’t think Gary could have faced a day unit so when a certain hospice in north west London came available he arrived and within 30 mins ,blood taken , dinner served and doctor around and into bed … .he had 2 transfusions last Friday

I can’t quite believe how wonderful the hospice is and for anyone reading this please go and see one ,i feared them to much it was almost admitting defeat going to one but I needed to get my head out of the sand ….. I only wish Gary had gone there in August to sort out his pain management instead of popping ibuprofen like sweets .

He also had low sodium , but that has come up as well as his red blood count ,for how long we don’t know . He still remains pretty tired but I went Sunday and he managed so stay awake for 3.5 hours .and today for 3 hours .

He is suffering with confusion manly at nightime and in the morning , previous scan from October showed the cancer had spread to the dura and doctors think this is causing the confusion , he can be talking normally and then talk about his trip to the gym or standing on chairs ,very convincingly.the doctor did say , you do know that you have been in bed the whole time and he will reply ,well it happened before you came in to see me .

I’m not sure what the future hold with him returning home , as this confusion is worrying .I’ll take it day by day . They do give him haloperidol in the evening to help him sleep and calm him which does help

User

Posted 12 Dec 2022 at 23:15

Oh love, my heart breaks for you. Yes, hospice team tend to be far better than hospital or GP at sorting practical things, getting pain relief balanced, that kind of thing. Most hospices also have a children's social worker who can help with preparing your daughter. Is the school aware?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Dec 2022 at 14:43

So sad to read your updates Fiona. It’s been such a difficult time and don’t know how you’re doing it all.

I’m really pleased to hear that you now have some help and support with Gary in the hospice and that they have been so good with him.

You’re doing amazing, keep getting all the support you can. Really hope Gary can remain comfortable and without pain.

Sending our love & best wishes x

User

Posted 15 Dec 2022 at 09:45

I am so sorry to read this it is heart breaking for you and your family. This is such a cruel disease for the person with it and also for the whole family. I will be thinking and caring about you, stay strong. Barbara xx

User

Posted 24 Feb 2023 at 14:25

I haven’t been able to come on this site for a while ,

my brave Gary lost his fight on the 21st January , he made it home for Christmas new year and my birthday on the 6th January .

he returned home on the 22nd December from the hospice and mental I got my old Gary back , all the confusion disappeared and for a few weeks we had a great time. , I’m forever grateful for the hospice applying for a night carer so I could get some sleep but I pretty much looked after him and cared for him and he died in my arms . Our daughter ciara was there too , only 4 I don’t think she completely understood what had happened

His mental strength throughout was unbelievable and even in those very dark moments of facing death he never broke . The Thursday before the palliative care nurse had. Come to see him and she asked how he was , “ feeling … he said “ I feel like death “ within a couple of hours he feel into a sleep and apart from once when we tried to make him more comfortable did he call my name .

He said he had a great life and at 55 said he had achieved so much .

His celebration of life service was last week and he had a great send off ,

so daddy is in heaven eating cotton candy , and drinking coffee , she asked can we go to heaven on his birthday to give him his presents , you got to love a 4 year olds innocent mind .

Much love to everyone

fiona

User

Posted 24 Feb 2023 at 14:39

So sad Gary put up a brave fight with your help you were outstanding the old saying they can't take away what you have already had he had a loving wife and a lovely daughter he knew that to the end please go forward knowing that good luck going forward and he will always be remembered with pride gaz 61

User

Posted 24 Feb 2023 at 15:22

Fiona so sorry to hear of your loss please accept my sincere condolences. Take care of yourself and your daughter.

Thanks Chris

User

Posted 24 Feb 2023 at 15:27

Fiona this is heart wrenching and my condolences to you. I’m awaiting my 56th birthday and have a 13 year old boy. I too was diagnosed 2015. All so scary.

I wish you love and strength moving forward x

User

Posted 24 Feb 2023 at 16:11

So so sorry for your loss Fiona. I’ve been thinking of you often over the past couple of months and had hoped to read of some sort of miracle ❤️

You’ve been incredible looking out for and caring for Gary while also looking after your little girl, I’m sure these past months have been so difficult I can’t even imagine. Our thoughts are with you and Ciara, and so pleased to hear you all managed to spend some really lovely times together over Christmas.

Lots of love

Elaine xx

User

Posted 24 Feb 2023 at 17:02

Fiona, you have been a fierce lioness over these months and years - all I can wish for you is a little more of that strength to get you through the next few days, weeks, months .... eventually, they will turn to years, you will find a new normal and you will look back and be proud.

With heartfelt love xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 25 Feb 2023 at 08:44

Fiona I have thought of you and your family many times. The strength you have shown caring for Gary and your family has been amazing. Please accept my sincere condolences and very best wishes for the future.

Jim

User

Posted 25 Feb 2023 at 09:34

Fiona,
I am so sorry for your loss, our thoughts are with you and your family.

Derek

User

Posted 25 Feb 2023 at 20:38

So sorry to read this. My thoughts are with you and your family.

Ido4

User

Posted 25 Feb 2023 at 21:03

Fiona, My heart goes out to you and your daughter. You have been so strong and given your wonderful Gary all the love and care a body can give right to the end.
May you have the strength and resilience you need to carry you on to raise your little one.

Love

Leila

Edited by member 26 Feb 2023 at 02:08 | Reason: Not specified

User

Posted 26 Feb 2023 at 10:03

So sorry for your loss sending deepest condolences to you and your family

Ann xx

User

Posted 26 Feb 2023 at 16:14

Many of us are members of one club or another that know most of the members. However, this group is more than a club and we though not see each other but are closer and loss of one is felt deeply by others.

Fiona so sorry to hear of your loss. Please accept my sincere condolences.

Fred

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